Elevated Sed Rate

[philamom]

My daughter's Sed Rate has been elevated since November. In November it was 96, then 92. In December it was 94, along with elevated c-reactive protein. In March it was 80. Anyone else have an elevated sed rate for months? How much elevated? Normal is below 20 for my daughter's age.

[mom24]

My daughter's Sed Rate has been elevated since November. In November it was 96, then 92. In December it was 94, along with elevated c-reactive protein. In March it was 80. Anyone else have an elevated sed rate for months? How much elevated? Normal is below 20 for my daughter's age.

Hi! I have had JRA (currently in remission) since I was three and I have to tell you that sounds like a very high # for a child. I would strongly urge you to consult a Rheumatologist. I have heard that There is a good ped Rheum in NYC if you are in the area. I have LYME now too and its interesting to note that my SED rate is currently a 10 (I am a 40ish) and have joint pain totally attributable to my LYME. Is there one particular joint involved or several? Hang in there it will eventually get better :-)

[philamom]

She has an appointment at St. Christophers in Philly on Wednesday. I know the sed rate is high, but couldn't find much information on it being that elevated in children. I will pm you for the name of the NYC Rheumy, just in case. Thanks.

 

So glad to hear you are currently in remission!!

[mimip]

Hi,

I'm new here but I saw your post and wanted to reply.

 

My husband's sed rate and CRP were both very elevated for an extended period of time. His sed rate was 105 and his CRP was 185.2, both should have been under 10 or 15. Many doctors didn't think it could be Lyme because of those numbers. They thought he had Sarcoidosis or Lymphoma instead. Turns out he was positive for Lyme, Mycoplasma, Bartonella, Anaplasmosis, and we strongly believe Babesia as well. Once he got on higher doses of antibiotics both came down pretty rapidly. They were elevated for about 2 months, and may have continued to stay elevated if he didn't start on more medication (Doxy, Biaxin, and Plaquenil).

 

Lyme can cause elevated sed rate and CRP, but there are others with Lyme with normal levels. My husband also had strong Bartonella symptoms which can present as Sarcoidosis and Lymphoma, so I wonder if Bart can cause elevated sed rate and CRP. Has she had any co-infection testing?

 

Basically, they are just makers of inflammation and can be elevated with many conditions.

 

When we first saw his elevated rates he was taking just Doxy, but it is possible it was enough for him to Herx, which can also elevate those numbers.

 

I would be careful going to a rheumatologist for Lyme because there is a tendency for rheumatologists and infectious disease specialists to dismiss Lyme and other co-infections. That was our experience with both anyway. Maybe try to find a lyme literate rheumy. Even some LLMD's were surprised at my husband's high levels. Do you have an LLMD?

 

Good luck,

Mimi

[philamom]

Mimi-

Thank you for your response. Yes, my daughter is positive for lyme, bartonella, RMSF, mycoplasma (slightly elevated IgG), and at the time of the highest sed rate number, strep (high d-nase). She see's Dr. J in CT. He recommended an appointment with a Rheumatologist. I am a little nervous about the appt - will speak with DR. J before making any changes or starting meds. I don't know of any lyme literate rheumy - wish I did. My daughter started having problems (with this flare) Sept 1st. I think it was due to a strep infection. Her LFT's wen't into the triple digits and her strep titer in the 600's. She was taken off her antibiotics for lyme & Co. because of the elevated LFT's. She then became ill with erythema nodosom, joint pain, headaches, nausea, gerd, GI complaints, fatigue, extremely pale, cold, vertigo. Other labs pointed towards lupus (or drug induced lupus), so she remained off antibiotics. But symptoms got worse. In December, we took advantage of her being off abx and ran the new borrelia culture, which was positive. She's also positive with lyme via Igenex and Bart via Specialty lab. When we attempted to put her back on abx (zith), she couldn't tolerate it - we tried twice. We eventually got her back on Amox the end of February, and slowly been increasing it. Thats why I think her Sed Rate is starting to go down some - into the 80's. Her symptoms are better some as well.

 

Did you know about the lyme and co before seeing the Rheumy? Did they try to change/alter treatment? Did the treatment make your husband's lyme symptoms worse?

 

Thanks again, and I hope he's doing better!

[mimip]

Mimi-

Thank you for your response. Yes, my daughter is positive for lyme, bartonella, RMSF, mycoplasma (slightly elevated IgG), and at the time of the highest sed rate number, strep (high d-nase). She see's Dr. J in CT. He recommended an appointment with a Rheumatologist. I am a little nervous about the appt - will speak with DR. J before making any changes or starting meds. I don't know of any lyme literate rheumy - wish I did. My daughter started having problems (with this flare) Sept 1st. I think it was due to a strep infection. Her LFT's wen't into the triple digits and her strep titer in the 600's. She was taken off her antibiotics for lyme & Co. because of the elevated LFT's. She then became ill with erythema nodosom, joint pain, headaches, nausea, gerd, GI complaints, fatigue, extremely pale, cold, vertigo. Other labs pointed towards lupus (or drug induced lupus), so she remained off antibiotics. But symptoms got worse. In December, we took advantage of her being off abx and ran the new borrelia culture, which was positive. She's also positive with lyme via Igenex and Bart via Specialty lab. When we attempted to put her back on abx (zith), she couldn't tolerate it - we tried twice. We eventually got her back on Amox the end of February, and slowly been increasing it. Thats why I think her Sed Rate is starting to go down some - into the 80's. Her symptoms are better some as well.

 

Did you know about the lyme and co before seeing the Rheumy? Did they try to change/alter treatment? Did the treatment make your husband's lyme symptoms worse?

 

Thanks again, and I hope he's doing better!

 

Wow, your daughter's symptoms are so similar to my husband's!I knew about Lyme from my former boss whose daughter was in the movie Under Our Skin. She was helped by Dr J in CT. At first we didn't think he had Lyme because he primarily had respiratory problems, but by the time we saw the infectious disease specialist and rheumy we were sure it was Lyme and at least Bart and Babs as well, but didn't have any proof.

 

My husband got sick on Sept.10th and had flu-like and respiratory symptoms. On Sept 22nd he was dx with bronchitis and given a Zpack and Advair. He rapidly got much worse with migrating joint pain, skin pain, headaches, photosensitivity, difficulty standing or walking, dizziness, inability to control body temp, nausea and vomiting, mental confusion, chest pain, anxiety, muscle spasms, etc.

 

On Sept 26th he was dx with Lyme by clinical presentation by his primary care doc. He was given 10 days of Doxy and told he would be better by then. He instead got worse and developed a rash on his legs, severe leg swelling, and horrible, profuse night sweats in addition to the other symptoms. Way too many symptoms to list.

 

On Oct 4th we returned to the doc who called in an infectious disease specialist. They took away the Lyme dx and tested for Legionaire's Disease (it was negative). His bloodwork came back at that time with sed rate at 100 and CRP at almost 170.

 

We were then sent to the rheumatologist who dx the rash as Erythema Nodosom Migrans (consistent with Bartonella). He felt it was Lupus or Sarcoidosis but also reluctantly did a Quest Lab Western Blot for Lyme and tests for Mycoplasma, Babesia, and Anaplasmosis. He wanted him to stop abx and start oral prednisone but we refused until Lyme results came back. He said he did not believe it was Lyme or any co-infections. When his results came back he was neg for Lupus (although some labs were consistent with Lupus, it was ruled out) and Sarcoidosis, and positive for Mycoplasma and Anaplasmosis. His Lyme WB was CDC neg but there were some positive bands, and Babesia came back negative. At that point his sed rate and CRP went up to 105 and 185.2. The rheumy felt there was no chance of Lyme and felt it was more likely Lymphoma, but at least he listened to us and was very open to learning more.

 

On Oct 19 we finally got in with an LLMD and Plaquenil and Zithromax were added. A month later the Zithro was changed to Biaxin and that's when he really started to feel better, but still with symptom cycles. It was mid Nov when his bloodwork was re-done and his sed rate and CRP were back to normal. He still has symptoms but a lot less.

 

So, yes, he did get worse while on treatment but then better. He did not have an LLMD at all until 1 month in to being sick so through the worst of it we were basically on our own. We were never sure if he was having a bad herx, it was from the infections, or both. If we had had an LLMD at the time it probably would have been a lot more controlled of a course of treatment.

 

A lot of his symptoms seemed to be from Bart- Erythema Nodosom, GI, GERD, anxiety, stabbing pains in the shins and soles of the feet, presenting like Sarcoidosis, presenting as Lymphoma, etc. We've always wondered if his elevated sed rate and CRP were from an autoimmune respose, or from Lyme or a co-infection, especially Bart. It now makes me wonder if it is the Bart with Erythema Nodosom Migrans that corresponds with the high sed rate and CRP.

 

If Dr J suggested a rheumy I would trust him, but you might mention to Dr J about the similarities with my husband's Bart symptoms and elevated rates and see if that is something he's noticed.

 

Sorry this is so long, but I hope you find his story helpful. I would have responded sooner but my 9 year old daughter appears to have PANDAS and we are trying to get help for her. I hope your daughter is doing better. I feel for you. Hang in there!

 

Hugs,

Mimi

[sptcmom]

My daughter's Sed Rate has been elevated since November. In November it was 96, then 92. In December it was 94, along with elevated c-reactive protein. In March it was 80. Anyone else have an elevated sed rate for months? How much elevated? Normal is below 20 for my daughter's age.

 

Sed rate is an acute phase reactant parameter in blood work. Quite non specific without CRP, Ferritin, CCP and a few other acute phase variables also being checked.

It can be elevated in children with Lyme and Co who go into autoimmune phase, show up with positive SLE markers. What also can happen is some children go into Auto-inflammatory phase and end up with high sed rates, high CCP etc. One thing thats coming up more in children is CRMO- chronic relapsing multifocal osteomyelitis. DS10 is one example of that and have three more in my practice. So depends on the symptoms.

Since 2009, DS has had off and on relapsing difficulty walking, leg aches, pains, hip pain, the MRI shows up as bone marrow edema- another nonspecific marker, CCP is 42, ESR is 54. We had the ESR down to 15 last year and were in remission with the CRMO for a year until last summer he had a sudden relapse.

When training with Dr J in CT, he told me about a little boy from Italy he sees with severe CRMO at 12 sites on his body. The boy recovered after 2 years.

Dr Kling who also sees DS, told us its heavy metals corrupting the bone marrow, causing inflammation and the elevated sed rate- so we're working on that.

So depends on the symptoms.

[philamom]

mimip- we were treating my daughter for PANDAS before the lyme. She had a major onset of PANDAS symptoms in 2007 (mixed bag of everything) nine months after a tick bite, that went into remission after a few rounds of abx for a sinus infection. Afterwards, she had another two exacberations that also remitted with abx. In March 2009, she got sick again, and it's been chronic ever since. We found out about the lyme in July 2010. For years previous to the major onset, my daughter had frequent sinus infections that presented with minor (but enough that it was recognized) behavioral symptoms that subsided with treatment. So not really sure what was first for her, Lyme or PANDAS, but now just call it PANS. She use to present mainly with behavioral symptoms, but now seems to be more physical symptoms.

 

I hope your daughter gets well soon! My dd is 10.

 

I'm running out, but will post later about her Rheumy appt. yesterday.

[philamom]

As suspected, Rheumy wasn't too interested in lyme/PANDAS diagnosis. Whenever I brought up strep or lyme (even showed dd's recent culture photo of the spirochetes) they changed the subject. It was a two hour wait and we had to go through dd's history twice before finally speaking with the doctor. I asked if my husband and I could first speak with the doctor alone (brought grandma to sit with dd), but was told that's not how they like do things - hmmph.

 

Anyway, they don't feel she has lupus. They are running a few more labs to check for Anti-phosholipid syndrome.

 

Here are her labs:

 

Sept- HIGH= LFT's 300's, dnase 663; LOW= cholesterol

 

Oct- HIGH= LFT's, dnase, protein & globulin

 

Nov- HIGH= LFT's, dnase, sed rate 96 & 92, platelet count, protein/globulin, CH50; LOW= glucose, lymphocytes CD 19, hematrocrit

Nov- ANA+ (nucleolar, homogeneous), DNA antibody+ (crithidia), high PTT LA Screen

 

Dec- HIGH= LFT's, sed rate 94, C reactive protein 1.08, fructosamine, globulin, triglycerides; LOW= RBC, hemoglobulin, hematrocrit, cholesterol, hdl, alb/glob ratio, total iron & binding capacity

Dec- ANA+ (nucleolar, homogeneous), negative DNA antibody, high PTT LA screen, high DRVVT screen, positive hexagonal phase, negative DRVVT confirm

 

Mar- HIGH= sed rate 80, RDW, creatinine, total protein, globulin, triglycerides; LOW= cholesterol

Mar- ANA+ (nucleoloar, speckled), negative DNA antibody, high PTT LA screen, negative DRVVT screen, weakly positive hexagonal phase

Edited April 27, 2012 by philamom

[philamom]

Besides Rechts Regulat (don't think my dd could drink it), is there any supplement you could recommend for thinning the blood? Thanks in advance.